Guidelines for the diagnosis and management of methylmalonic acidaemia and propionic acidaemia: first revision

P Forny, F Hörster, D Ballhausen… - Journal of inherited …, 2021 - Wiley Online Library
Isolated methylmalonic acidaemia (MMA) and propionic acidaemia (PA) are rare inherited
metabolic diseases. Six years ago, a detailed evaluation of the available evidence on …

Health-related quality of life of young people with and without chronic conditions

M Pinquart - Journal of Pediatric Psychology, 2020 - academic.oup.com
Objective The aim of this meta-analysis was to compare levels of health-related quality of life
(HRQOL) among children with and without chronic physical and/or sensory conditions …

[图书][B] Children in difficulty: A guide to understanding and helping

J Elliott, M Place - 2012 - taylorfrancis.com
Written by two leading experts in the field, this welcome third edition of Children in Difficulty:
A guide to understanding and helping discusses some of the most common, yet …

Ethical decision-making for children with neuromuscular disorders in the COVID-19 crisis

NT Laventhal, RJ Graham, SA Rasmussen, DK Urion… - Neurology, 2020 - AAN Enterprises
The sudden appearance and proliferation of coronavirus disease 2019 has forced societies
and governmental authorities across the world to confront the possibility of resource …

Development of a theory-based family resilience intervention program for parents of children with chronic diseases: A Delphi study

L Ren, Y Wang, H Jiang, M Chen, L Xia… - Journal of Pediatric …, 2024 - Elsevier
Background Long-term illness exposes children with chronic diseases to a high risk of
deterioration of physical and mental health. Developing an effective family resilience …

A biobehavioural and social-structural model of inflammation and executive function in pediatric chronic health conditions

KP King, T Humiston, MA Gowey… - Health Psychology …, 2024 - Taylor & Francis
Evidence indicates that pediatric chronic health conditions (CHCs) often impair executive
functioning (EF) and impaired EF undermines pediatric CHC management. This …

[HTML][HTML] Health-related quality of life in developmental coordination disorder and typical developing children

A Redondo-Tébar, A Ruiz-Hermosa… - Research in …, 2021 - Elsevier
Purpose To analyse: 1) the differences in health-related quality of life (HRQoL) between
typically developing (TD) children and children with developmental coordination disorder …

Psychometric evaluation of the traditional Chinese version of PedsQL 3.0 cardiac module scale in adolescents with congenital heart disease: reliability, validity …

YC Huang, YC Chen, BS Gau, JK Wang… - Health and quality of life …, 2023 - Springer
Background In recent decades, 95% of children with congenital heart disease (CHD) can
survive to adolescence and adulthood. However, adolescents with CHD are prone to poorer …

Health-related quality of life in pre-pubertal children with pediatric growth hormone deficiency: 12-month results from a phase 3 clinical trial of once-weekly …

J Loftus, J Quitmann, SR Valluri - Current Medical Research and …, 2024 - Taylor & Francis
Objective Treatment of pediatric growth hormone deficiency (pGHD) with daily injection of
recombinant human growth hormone (somatropin) aims to increase height velocity and …

Clinical effectiveness of drop-in mental health services at paediatric hospitals: A non-randomised multi-site study for children and young people and their families …

A Roach, S Bennett, I Heyman, A Coughtrey, I Stokes… - Plos one, 2024 - journals.plos.org
Background Despite the high prevalence of mental health difficulties in children and young
people with long-term health conditions (LTCs), these difficulties and experiences are often …